Amy Tuteur, an obstetrician-gynecologist, also took issue with Baker’s letter. Writing at Time.com, Tuteur said it would be unethical not to discuss possible medical treatments (i.e., abortion) with a pregnant woman carrying a child with Down syndrome — even if, like Baker and my wife, the patient had already said she wasn’t interested in “terminating” her pregnancy…

That got me thinking: How far should a doctor go when providing “information” about odds-based medical and social outcomes to an expectant mother? Life is risky. Life is dangerous. There’s a lot that can go wrong. Should a doctor list all that stuff out at baby’s first ultrasound? A 2003 study published in The Lancet found that children who grow up with one parent are at increased risks of psychiatric disease, suicide, and addiction. Maybe physicians like Tuteur should impress on their unmarried pregnant patients the risks to their quality of life should they decide to “continue with the pregnancy.”

How far should a doctor go? Far enough to provide all the information relevant to making the medical decision at hand:

What are the chances that a Down Syndrome child will be intellectually compromised? 100%.

What are the chances that a Down Syndrome child with have a congenital heart defect? Approximately 50%.

What are the chances that a child in a one parent family will develop psychiatric disease? Nowhere close to either of these two salient facts about Down Syndrome.

Hennessey illustrates the problem of starting with the conclusion and attempting to reason backward. It is incompatible with medical ethics which starts with principles (autonomy, justice, beneficence and non-maleficence) and leaves all possible conclusions open. In addition, starting with a predetermined conclusion often leads to tortured logic and intellectual incoherence. In particular, it often leads to censorship, muzzling health providers to prevent them from giving accurate information so as advantage the pre-determined conclusion.

Hennessey wants to muzzle providers so they cannot provide women with the facts about Down Syndrome. He believes that the ends, preventing abortion of Down Syndrome children, justifies violating ethical principles.

I suspect that most people working in obstetrics and pediatrics recognize just how unethical such “counseling” would be.

But there is another, equally unethical counseling program that enjoys wide favor among obstetricians and pediatricians. It’s call The Baby Friendly Hospital Initiative.

It starts with the conclusion that all babies and all mothers benefit from breastfeeding and that the benefits are so large that they justify violating the ethical principle of medical autonomy. The truth is that the benefits of breastfeeding in industrialized countries are trivial. There is no evidence that breastfeeding rates have any impact on population based health parameters like term infant mortality or life expectancy. Breastfeeding can be lifesaving for preemies, but the majority of babies are not born prematurely. So the purported empirical justification for the violations of medical autonomy simply don’t exist.

Even if they did exist, the central “steps” of The Baby Friendly Hospital Initiative would still be unethical. It is UNETHICAL to muzzle healthcare providers, whether the issue is abortion or breastfeeding. It is UNETHICAL to attempt to manipulate a patient’s choices, whether that means mandating vaginal ultrasounds for women who want terminations, or locking up infant formula and forcing women to sign consent forms acknowledging the “risks” of formula feeding. It is UNETHICAL (and unscientific) to ban formula supplementation or pacifiers.

In medicine, the ends do not justify the means. Sure we could save lives if we forced people to donate kidneys, but that’s unethical since the most fundamental medical right is the right to bodily autonomy. In medical ethics, we reason FROM principles, not TO predetermined conclusions.

Mr. Hennessey fails to understand that, but he’s just one individual attempting to convince others to make the same choice that he made.

The ethical failure that is The Baby Friendly Hospital Initiative is far more egregious. It is an effort by healthcare professionals to ignore women’s bodily autonomy while insisting that the ends justify the means. They never do.

Her baby, her body, her choice — whether we are talking about abortion or about breastfeeding.

I am curious about what is taught in medical schools about counseling patients. Surely at some point, there is an instructor who spells it out for you: “It’s your job as the health care provider to inform your patient of ALL the facts and ALL of their medical options. Your personal opinion about what the “best” possible outcome should be means exactly DICK. You should do everything in your power to avoid steering your patient in one direction or another, particularly with sensitive decisions such as whether to terminate a pregnancy.”

I mean…I would think this would be Medical Ethics 101. As in, something to teach the future doctors pretty early on…so that, if they find they have a moral problem with leaving decisions like these *completely* up to the patient, they can maybe find a different profession.

Gene

I never had a formal class. (Though I took multiple ethics classes in college because I was interested in it). It was very much on the job training. If I have a bad case or new bad diagnosis, I bring my residents in with me.

I get asked all the time, what would you do if it were your child (sad but true, having kids makes families see you as more trustworthy in pediatrics). Sometimes I will answer honestly, but for a case with no right answer, I tell the family I can’t, because what is right for me is not necessarily what is right for them.

RubyRed

I’m in vet school, and we’re taught to provide the client with all possible options that are available and to discuss the advantages and disadvantages of each, starting with the “gold standard” treatment. Personal preference of the clinician is not supposed to come in to it. But we do have to mention all of the options, regardless of how unpalatable some of them are! We then do interview simulations with actors and coaches (who are or were practicing veterinarians). Then we have to document which treatments/procedures that the client refuses, so that if they try to claim later on that you never offered a treatment it is included in the medical record.

The Bofa on the Sofa

OT: Many of our regulars are reporting new additions to their home this summer (congrats to all of you!), but we have a new addition of our own. My Wife, DVM, has had a standing order for the last year or so that if a Boston Terrier rescue comes through, she is to inquire about acquisition. One came through a couple weeks ago, but we didn’t get it. This guy, however, has moved in to stay.

Amazed

Conrats! This black-white fellow will make a lovely addition to every home!

Charybdis

Congratulations! I have a soft spot for Boston’s, as my grandparents always had one.

The Computer Ate My Nym

Congratulations! What a cutie!

Allie

Yep, counselling a patient to make the choice you think is right for them = unethical.

Providing a patient with the information they need to make an informed decision that is right for them = ethical.

This ain’t theoretical physics, people.

Who?

A somewhat on topic note here from the Dark Ages….aka the state I live in.

I am a Queensland whistleblower who used to work as a health professional. Misogyny, corruption and racism are rampant here.

Who?

I hope you are doing well.

Gatita

Jezebel has a gut-wrenching account of a woman who had an abortion at 32 weeks cause of severe birth defects in her baby. This is a must-read. http://trib.al/Wt9SlpD

“Another thing I want to say is that yes, I had this very particular, horrible situation—but if I had had an abortion at 20 weeks just because I didn’t feel ready, that should be okay, too. Like it or not, all of our rights are intertwined. Maybe there’s some woman who has had four abortions and maybe that feels really wrong to you. But my rights are wrapped up with hers, so I have to fight like fuck for her to have as many as she wants—not just for her sake, but for mine, too. If I ever have a daughter, the way things are currently going, she’s going to be fucked if she ever goes through this.”

Deborah

I think Hennessey’s comparison of a Trisomy 21 diagnosis with the potential psychiatric issues of a child raised by a single parent is a huge stretch in ethical gymnastics.
And I don’t think anyone is arguing for the termination of all Down’s pregnancies. Only that parents be given an accurate prognosis in order to make a decision that they can live with emotionally and financially.

Spamamander

Oh noes. I have a daughter with Trisomy 21- and I was a single parent- and my oldest has ADHD and anxiety issues, my youngest is likely on the spectrum/ ADHD/ anxiety. IT’S ALL MY FAULT.

Gatita

I have a child with a relatively mild disability. He’s in a mainstream classroom, he’s smart, he has friends. And yet it’s been unbelievably difficult at times to care for him. We’ve spent tens of thousands of dollars on his medical care and anticipate spending thousands more. And because of his delays we are still doing things for him that kids two and three years younger than him have already mastered. It’s fucking exhausting. I would kill and die for my kid but the experience has really opened my eyes. If it’s this hard parenting my kid, who will eventually grow up and be capable of holding a job and living independently, it must be exponentially harder to care for a child who will never live independently. I can’t blame a parent for being unwilling to continue a pregnancy under those circumstances.

Montserrat Blanco

For me the issue has always been the child. Happily I did not have to make that choice and I am grateful for that. I am blessed with a normal son. Had I been pregnant with a baby with serious issues down the road, I would have thought about the baby, would it be happy needing surgery various times a year? Would it be happy with a lot of hospital admissions? Would it be happy with a lot of painful procedures? For me the issue with Down syndrome is not so much the neurological problems, but the high rate of serious heart defects, that can easily make your life a complete hell.

Gatita

The intellectual disability is a big deal too because it means most people with Down Syndrome will never live independently. That may may mean your child will go into intuitional care after your death and the rates of abuse and neglect in those settings are soul shriveling.

Jackie

Dr. Amy, you are great and I love this blog.

Maya Markova

+ 1

DelphiniumFalcon

Well since this appears to be OT day may as well throw in my lot…

Just got results back from the MRI on my kidney. The previously thought benign tumor is looking more and more like a clear cell renal carcinoma. Yay.

I know if that’s that case surgery is going to happen no matter what and I’ve madey peace with that. What I want to know is the pros and cons of my options.

In my area they’re more likely to suggest removing the entire kidney to a partial nephrectomy. I’d like to keep as much of my kidney as safely possible but I just plain don’t know if it IS safe to do that with what I have.

Here’s he quick and dirty:
13 mm lesion exophytic from the inferior pole the right
kidney. Previous scans describe it as a complex enhancing cyst. The first time it was visualized back in October 2014 it was 11 mm.

I’m just so done with this I don’t even care that I need to have surgery. I just want it taken care of asap.

T.

My father had renal cancer and they took one of kidney off some months ago. There were some minor problems after that, but I can assure you he now lives a very good life, just as before. My father also had a heart attack and so his case was complicate.

It sucks, but it can be done.

attitude devant

Not my field (if ‘computer’ shows up, it’s HER field) but just wanted to give you a big hug.

Nick Sanders

I’m going to second attitude deviant’s big hug. Whatever happens next, I hope you are as well as can be, physically and emotionally.

Irène Delse

I’m sorry you have to go through that. In your place, I’d simply bring up the question to the doctor, ask them to explain why they recommend a total nephrectomy and if a partial one is possible.
Virtual hugs and positive thoughts, in any case!

Angharad

Nothing helpful to add, just positive thoughts/prayers/virtual hugs. Hopefully everything will be resolved quickly and completely.

theadequatemother

Our surgeons do a bit of both and I have little idea of how they chose. But I do know that our patients do very well and express great satisfaction with their care and when I follow them as part of the pain service they do great – toradol infusions for MIS and epidurals for open.

I’m sorry you are facing this and wish you well as you weigh your options and move through the system.

Gene

I don’t have any medical insight. But I’ll keep you in my thoughts.

Megan

I’m not a surgeon so I cant weigh in but I hope all goes well for you. Hugs.

DelphiniumFalcon

Thank you guys for all the thoughts and well wishes.

From my limited understanding some surgeons prefer to take the entire kidney so they don’t miss any cancer that could be hiding and just taking a portion could spread them around/piss it off. Other surgeons prefer partial nephrectomy to spare as many nephrons as possible with a tumor this small and encapsulated because it’s unlikely to have spread to the rest of the kidney. From my own observations partial nephrectomy is the surgery of choice in the Eastern US while taking the entire kidney is more likely in the Western US. I’m in the Western portion.

I don’t know enough about the procedures, the type of cancer, or the prognosis of the surgeries to make an educated decision but I don’t want to lose an entire kidney just because of ideology that may or may not be shown to be more beneficial.

Gatita

I’m so sorry you’re having to deal with this. Are you being treated at an NCI-designated National Cancer Center? Sometimes effective procedures aren’t offered at non-NCC hospitals because the clinicians don’t have the expertise. For example, intraperitoneal chemotherapy improves ovarian cancer outcomes yet just a little over half of women who could benefit are getting it. You are more likely to get it at a NCC. http://www.cancer.gov/research/nci-role/cancer-centers

DelphiniumFalcon

Thankfully I’m in a good area. I’ve got an NCI designated center a few hours to the north that managed my cousin’s case. They were able to extend my cousin’s expected survival time for an astrocytoma the size of a grapefruit at diagnosis from six months to eight years so I feel pretty good about that. They did an amazing job resecting that thing without destroying his quality of life for the time he had left. Plus family in the area. My Aunt has a bit of a dark sense of humor so she’ll probably be happy someone gets to walk out of there without an expiration date.

Then a few hours south we have a brand spanking new cancer genomics center in case something really goes sideways. I doubt I’ll have to take advantage of it but the hospital I work at is one of their axillary sites so I wouldn’t even have to drive forever for treatments.

demodocus

ah, sh!t. Good luck

Montserrat Blanco

Not an expert surgeon, just the normal oncologist, but the NCCN guidelines do recommend partial nephrectomy for your tumor size. I would go for it if the surgeon does not come with a really good reason to perform a total one (impossible good margins with a partial one due to location, etc)

BeatriceC

I’m going to join in with the crowd that can just offer hugs. I’m so sorry you’re dealing with this.

Who?

Me too.

Amazed

Good luck! I am too ignorant on the subject to say more. Just good luck.

Azuran

I didn’t even know you could do a partial nephrectomy.
Far from being an expert on this stuff. But from a general medical and surgical point of view, it probably depend on the size, location and type of the tumor as well as the surgical facility.
I might be wrong since I’m a vet, but surgically, removing a whole kidney seems to me to be a lot easier and have a lower intra and short term post surgical risk as a partial nephrectomy. A partial nephrectomy is probably better in the long run since you have more kidney tissue left, but possibly has a higher risk of the cancer coming back. So maybe some surgeons have less experience with this or some hospital are less equipped to deal with possible complications.

Really best thing to do would be to talk with it with your doctor and if necessary, have another surgeon evaluate your case to see if they would be willing to try a different treatment.

Good luck. I hope everything goes well.

Squillo

Sorry to hear it. Best wishes for a great outcome.

An Actual Attorney

Another hug in the mix.

The Computer Ate My Nym

I can’t give you really good advice not knowing the details of your case, but my general recommendation is to find the most expert surgeon you can and go with what they recommend. If you feel at all uncomfortable, get a second opinion from another experienced surgeon.

I’ll also add my best wishes for a good outcome and hugs! I’m sorry you’re going through this but glad that you’re getting it out now, not later on!

MI Dawn

More hugs. But I’ll second The Computer and suggest a second and possibly third opinion. Check with your insurance company for good cancer centers, and check your coverage!

People can live very well on one kidney. Many people have only one and you’d never know it. If you have to have it removed completely, you’re fine as long as your other kidney is healthy.

Good luck, and keep us posted!

MaineJen

I work in organ donation…an otherwise healthy person can survive perfectly well with only one kidney. One is really all you need. 🙂 I’d say if it’s safer and simpler to remove the whole kidney (which it probably is), you can do that. They can do a laporoscopic nephrectomy and you’ll have a couple of tiny scars. Hugs!!

fiftyfifty1

Uh, not so fast. Just because a person can live on only one kidney, doesn’t mean that we should be cavalier about taking the other one out. This topic has been studied scientifically, and consensus is moving toward preserving a portion of the kidney unless there is a reason not to (and if there is a surgeon experienced in doing the procedure available). The people who know most about this are the nephrologists and nephrologic surgeons, and that’s whom patients should go to for advice. And they should feel very free to ask pointed questions if they are told to just take it out including “Do you do partial nephrectomies yourself and if not could you please recommend someone who does who I can go to for a second opinion?”

DelphiniumFalcon

The NCI cancer center up North does partial nephrectomies regularly and I just got a consultation with them next Wednesday to get a better idea of what we’re dealing with. I’m feeling a lot better now.

I’d rather preserve as much tissue as safely possible just in case something happens to the other kidney. Car accidents, infections, or heaven forbid cancer in the other kidney are all possibilities and cloned kidneys are too far into the future for my comfort. 😛

It just seems like the smarter idea considering the very small size of the tumor from what I’m reading but then again that’s why I’m driving four hours to see the best people in the state for this stuff. They’ll know a lot better than me and my Google fu.

MaineJen

OK, just trying to reassure in case they do end up taking the whole kidney. 🙂

NoLongerCrunching

OT: what would cause a 4th degree tear in a vaginal hospital birth? The baby was 7 1/2 pounds and the mother had already delivered vaginally once. How could something like this have happened?

Megan

A shoulder dystocia certainly could. And SD isn’t limited just to big babies.

MI Dawn

Lots of possible things. A shoulder turned the wrong way, a hand/elbow bent. Poor management by the caregiver. Hard to say. I had a patient have a 3rd degree with all my best care. No 4th degrees, thankfully.

CSN0116

Mother of God. I shudder to think about that recovery 🙁

I had a strict pro-episiotomy policy with my DR – as in, DO IT and repair it pretty! Do NOT let my “all knowing” lady bits self-mutilate.

MI Dawn

Unfortunately, they can stil occur with an episiotomy. 🙁

CSN0116

You’re right. My DR timed my episiotomy with my 9.5 pounder beautifully. I only had 2nd degree tearing (however the hell that’s measured). Had he let it play out, I’m certain badddddd things would have occurred.

Vaginal tearing is the pits, period :'(

Nick Sanders

Like say having the baby’s clavicle broken?

…My mom loves watching Sister Wives and bought the midwife’s lies about there having been nothing a hospital could have done better hook, line, and sinker.

Angharad

All too true! I had an episiotomy, but I also had three additional separate second degree tears. I hadn’t realized that could happen, but apparently it can.

fiftyfifty1

” How could something like this have happened?”
Because that’s birth for you. Bad stuff can happen even to the lowest risk of women.

Kelly

Maybe the way the baby was positioned?

Gene

My mother had a 4th degree tear with my younger sister. We were both big (9.5-10lbs). First baby (me): no tear. Second baby (sis): 4th degree tear. Go figure…

Erin

My MiL had a 4th degree with a baby of a similar size. Said baby also had a 95 percentile head and was back to back during her exit.

Marki

Babies head was born to Quick it has to Come slow the finish manover was not used att labour. Mybe mom got an episotomi that inrcrise the risk.

CSN0116

I don’t do feelz – ever. When feelings get involved shit gets messed up. One can have conviction while leaving emotion and feelings aside. Undoubtedly I probably have some disorder – I have empathy and can evoke emotion – but I am extremely objective and rational, even regarding things that send most others into a tizzy. So this man’s emotional-based rant annoys me.

It feels like yesterday that I was read my options for TTTS treatment for my affected mo/di twins. Among them was selective reduction. That was a hard thought to consider, but my God it never offended me that my devout Catholic MFM uttered those words. In fact, when I asked which treatment had the highest efficacy rate he quickly told me selective reduction. It was the closest I would come to 100% survival of one twin and taking home a live baby – a fact. Every treatment aimed at dual survivorship was a crapshoot. My personal convictions took selective reduction off the table, but I didn’t throw a fucking hissy fit over the offer. I was grateful! Because at a different point in time, under different circumstances, who the fuck knows. Feelz = no-go.

guest

I was also offered selective reduction, and even though I immediately knew that wasn’t for me, I was very grateful that my RE brought it up. There was no pushiness. He said it was an option, I asked if in my case it was medically advisable for either my health or the babies’, he said not in his opinion, that was that.

Mind you, my decision not to reduce *was* based on feeling, but I can tend to my own feelings without needing them to be insulated from ideas that go against them.

Amy M

I don’t recall being offered selective reduction, though I knew what it was. I was under the impression that it could only be done with di/di multiples, but I never actually asked a doctor, so I don’t know. Based on what you guys are saying, it is possible with mo/di?

CSN0116

Selective reduction is quite common among TTTS affected modi twins. Laparoscopic intrauterine cord occulsion is the procedure used. It has a very high rate of leaving the surviving twin healthy, whereas even with laser ablation surgery, etc. fetal demise may still occur and/or brain damage.

Amy M

Oh ok, that makes sense. We were very lucky, my mo/di twins didn’t have any TTTS issues.

guest

Well, I had di/di twins, so I’m not sure what other type it would apply to.

Allie

I like the way you express yourself. You’ve got one heck of a literary voice : )

Lindsay

Interesting that he says only with his child with down syndrome did they present termination as an option. One of the first things I was asked when scheduling my initial OB visit was if the pregnancy was wanted or if I was looking to discuss my options. I found this reassuring.

MI Dawn

I brought it up at my first OB visit with both children because my mom had an ancephalic baby, and another with spina bifida (both died before term – IIRC the SB baby was only about 14 weeks, the other was 20). My docs were rather appalled but supportive, and my first U/S (done in those days at 16 weeks) was pushed up to 12 weeks so we could look for signs.

Valerie

I was thinking the same thing- I have no problem with all pregnant women being informed about where to get legit counseling in case pregnancy is unplanned.

LaMont

I could see this being the case:

Session 1: They are asked in a soft-pedal way if the pregnancy is wanted, or the couple makes it very apparent before the question is asked (either way, they don’t register a question about termination being raised).
…
Session n: They receive results, and only if anomalies are found is the question of termination (re-)raised.

That might square the idea of OB due diligence *and* his experience of only having the question asked during the Down Syndrome affected pregnancy.

fiftyfifty1

Exactly. Terminations typically happen for one of two reasons:
1. Pregnancy unplanned and unwanted at this time, in which case patient usually has abortion without ever even having a prenatal visit.
2. Anomalies/major medical problems.
If a patient has arrived for an actual prenatal care appointment (as opposed to just a quick visit for a pregnancy test) it’s usually because she is planning on continuing the pregnancy. Very few patients change their minds during the rest of the pregnancy UNLESS an anomaly is found. But if a major anomaly IS found, termination is a very common decision. Over 90% of women who carry a fetus with DS decide to abort.

Megan

OT: I have shingles. Anyone know offhand how long passive immunity to varicella lasts? I am really hoping I haven’t given chickenpox to my 3-month old…

Megan

(I feel like I remember maybe 4-6 months…?)

RNMeg

Wikipedia agrees with you..IgG for 4-6 months, IgA for as long as the baby is breastfed.

Can’t fool me twice

Anecdote, but I had shingles when my baby was 3 months old. I continued breastfeeding while taking valtrex, and kept the affected area covered when around my baby. Kiddo didn’t get chickenpox, so we made it through! Good luck to you. I hope everything goes okay and you can recover without much pain.

Megan

Thanks. It was diagnosed too late for antivirals (husband convinced me it was insect bites and I couldn’t see it; should’ve listened to my gut when I thought it might be shingles) but it has been covered up just because it’s on my back. It’s a pretty mild case so I’m dealing with the pain pretty well but I’m just worried about my baby. Hopefully, she won’t get chickenpox. How miserable it would be for a 3 month old.

Sue

Location on your back is an advantage, cos the blister fluid contains the virus. Strict hygiene should help. Good luck!

Gene

I took care of a three month old who caught chicken pox from mothers shingles. Both she and baby were taking antivirals. So it can happen…

Megan

Ugh. I hope that doesn’t happen with us. Poor baby.

Angharad

I don’t have anything helpful to add, except take care of yourself! Fingers crossed that your little one stays healthy, and that you recover quickly.

Who?

That’s miserable, I’m sorry.

Hope the little one misses the cp.

Charybdis

Yuck. I had Shingles a couple of months ago. It is my understanding that as long as the blisters are covered, there is much less chance of spreading the fun around because it is the fluid in the blisters that contain the virus.

Megan

Yeah it has been covered the whole time but I can’t rule out the possibility that I scratched it and then handled baby before I realized it was shingles.

indigosky

Don’t let the three year old get near the blisters, especially if they pop. My husband had it 18 months ago, misdiagnosed by the military doctor and he was in an office with a pregnant woman and a guy whose wife was pregnant plus two people with toddlers. Not fun when the second doctor freaked out that he had been with them for four days. No one ended up sick, no babies were harmed in utero.

Madtowngirl

I hope I never have to face the decision of whether or not to terminate a pregnancy because of fetal abnormalities. But if I do, I want my doctor to be honest with me and make sure I understand the possible outcomes of my choice. Maybe in the emotion of the moment, I would interpret it as badgering, but I’d rather be badgered than blindsided by reality.

Allie

“I’d rather be badgered than blindsided by reality”

Well said. Because you’re a mature, capable adult, who doesn’t need protection from facts.

Amy M

Ugh. Well, we all know that stupid women will make the WRONG decision if they are aware that it is an option. That’s why they can’t know that abortion or formula exist. As far as women are concerned, the wrong decision is whichever one is more convenient for the woman and that’s a slippery slope. If a woman makes one decision based on convenience or her own quality of life, she’ll become a selfish monster who takes some time for herself occasionally. Think of the children!!
/sarcasm

attitude devant

We all know that women can’t possibly know what’s best for themselves and their own families.

fiftyfifty1

This is what he has to say about why he thinks medical professionals talk about the downsides of Down Syndrome:

“A big part of the problem is that many of the doctors, nurses, and technicians handling these diagnoses have never met a person with Down syndrome”

Where have we heard this sort of talk before? Oh yeah, “OBs have never seen an unmedicated vaginal delivery”.
Seriously?! These doctors, nurses, technicians, genetic counselors etc have NEVER MET a person with DS, the most common trisomy syndrome even though genetic/congenital abnormalities is their specialty? Sure buddy.

Young CC Prof

I think most people even outside the medical profession know someone with Down syndrome, it’s fairly common. However, many people outside the medical profession may know an older child or adult with the condition, living a pretty good life, and genuinely not know that it’s frequently fatal in infancy. A doctor has a moral responsibility to make sure that parents facing the diagnosis are aware of all possible outcomes of Down syndrome.

T.

They can also not known the ones who aren’t so “high-functioning”.

And they don’t see them when they suffer from early dementia.

Women deserves all the informations before making choices.

fiftyfifty1

“They can also not known the ones who aren’t so “high-functioning”. And they don’t see them when they suffer from early dementia.”
Exactly. Down Syndrome has a huge range of outcomes. Some people can read simple books. Others are non-verbal. Some are happy and sunny. Some are aggressive to staff and repeatedly bang their heads against the wall. Some can join the swim team at the local YMCA. Others have serious heart defects and turn blue with walking across the room and die of congestive heart failure at age 5. And the early dementia that is so common is devastating. One of my favorite patients had that happen to him in his 30s.

MaineJen

My aunt had DS and died at age 50. She had developed devastating dementia…exacerbated by her worsening heart condition and increasingly difficult-to-control diabetes. She got to the point where she didn’t remember any of us, including my mom and dad, who had cared for her during her last years. Her doctors could not do the surgery to repair her heart because she became too fragile. It was horrible.

Before that, she had been functioning at about an 8-9 year old level. She could read and do crafts, was quite verbal and had a “strong” personality, loved comic books and barbies.

When I was pregnant the 2nd time my quad test came back at 1:43 for Down Syndrome…my only concern was whether the baby would have the heart defect. As long as she was healthy, the prospect of raising a child with developmental delays didn’t bother me as much. But everyone is different, and as fiftyfifty says below, every person with DS is different. It’s not something everyone can deal with.

Amy M

Sounds more like Hennessy has never met parents who are struggling with a DS child, or who have lost a baby/toddler with Down Syndrome.

TheArtistFormerlyKnownAsYoya

That struck me as an absurd statement as well. There are many, many people with Down Syndrome, unless you’ve been living under a rock, you’ve met at least one in your lifetime. Particularly if you’re in the medical field.

guest

I know someone else already said this, but what utter crap. If your definition of “many” is the same as your definition for “some,” then sure – *some* doctors probably haven’t met anyone with DS. I am 40 years old, and I’ve met I’d guess about eight so far in my lifetime without going out of my way to do so, and without having anyone with DS in my extended family. Actually, when I was in elementary school I was put in a program where advanced students from the upper grades were assigned to the special ed classroom to act as assistants. The implementation of this was a disaster, but it wasn’t a bad idea (if you’re going to have separate classrooms in the first place, that is).

Squillo

It’s patently ridiculous to suggest that many clinicians haven’t met someone with DS. It is probably true that a majority of those in the position of giving a diagnosis have no experience of living with or parenting someone with DS, or other serious disabilities. Along with all the medical information and alternatives, clinicians should (and in my admittedly limited experience most do) provide referrals to resources that can help answer questions about those experiences.

Amy

I don’t know anyone– ANYONE– who hasn’t met someone with Down Syndrome. That’s like saying they’ve never met a natural redhead or something.

An Actual Attorney

I honestly don’t remember having done so. If I did, it must have been such a casual meeting as to leave no impression. I do have a cousin with trisomy 3 (yes, that’s not a typo) but that’s a very different situation.

Kerlyssa

Weird. Maybe it is an age thing? The push for main streaming disabled kids in public schooling became a thing more in the 90s.

Roadstergal

There were a bunch of kids with DS in my public grade school in the ’80s.

Gene

And knowing someone with DS will make that person passionately pro life?

Umm, sure. Ask ANY person in emergency medicine (nurses, docs, emts, etc) about DNRs and end of life care. 99% will loudly declare comfort care only for themselves because they know what happens at the end of a life.

Maybe that’s why many people who know someone with DS would choose to terminate. Because it’s real, not abstract.

Susan

I have a niece with DS, and I would not chose to terminate.

guest

That is not a refutation of anything Gene said.

Gene

Many, not all. I have an adult relative with DS and have cared for countless patients with DS from high functioning to profoundly impaired and with a spectrum of physical issues.

Montserrat Blanco

Never ever. Never ever in our whole lifes. No, that 5 year old with the congenital heart deffect that killed her at 8 years old did not exist. And no, those 30y old that came to the clinic last year do not exist too and no, definetely that… Shall I carry on?

FEDUP MD

I have several long -term patients with Downs.

attitude devant

It’s bizarre. There’s actually a HUGE body of ethical and legal literature going back decades, and these anti-abortion idiots don’t seem to have read it. They just have a vested interested in saying that termination is never a valid option. Even worse, they want to keep actual facts out of the hands of the families facing these issues.

Madtowngirl

And they’ll be nowhere to be found when the family needs respite care, or financial help for all of the special care.

J.B.

Well, of course. They chose to have a baby, right?

demodocus

they chose to have sex in the first place

Who?

This is what really bugs me about their behaviour. Full of opinions and hot air about what others ‘should’ be doing, then zero, and it is zero, practical help.

That’s without getting into the subset who would penalise single mothers (funny they never mention single fathers) and make sex ed and contraception none existent or scarce. Not only no help, but actual hindrance in terms of making sure it doesn’t happen again and caring for the child.

Azuran

He’s really taking things to extreme and ridiculous territories.
A baby with DS absolutely has real physical and mental problems that will require special kind of care for all of their lives.
He wants to compare having a serious and honest discussion about the work and implication of raising a child with DS with telling poor women they shouldn’t have kids.

TheArtistFormerlyKnownAsYoya

Such a bizarre comparison. That was all he could come up with? One is a medical condition; one is not. No legitimate comparison at all.

Squillo

And what is especially ironic is that poor parents are in a particularly difficult situation in parenting children with disabilities. The time and money it takes to access even mediocre resources isn’t easily available to either single or low-income parents.

Gatita

He’s from the National Review. Nuff said.

Amy Tuteur, MD

Dr. Amy Tuteur is an obstetrician gynecologist. She received her undergraduate degree from Harvard College in 1979 and her medical degree from Boston University School of Medicine in 1984. Dr. Tuteur is a former clinical instructor at Harvard Medical School. She left the practice of medicine to raise her four children. Her book, Push Back: Guilt in the Age of Natural Parenting (HarperCollins) was published in 2016. She can be reached at DrAmy5 at aol dot com...
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